Saturday, December 31, 2011

Happy New Year!!!

This has been a doozy of a year! Heck, it's been a heck of a couple years! However, I'm going to take a lesson from my friend, Molly, from pricelesslittlepearl.blogspot.com, I'm going to be THANKFUL for my past year. All of us could spend a long time (some longer than others) cataloging our problems from this year: the economy, various aches & pains, natural disasters, etc. However, all that would do is depress us. It's just not healthy or productive. Instead, let's focus on the positive aspects. I don't mean to sound trite, but I'm thankful just to be alive and with my family.

There have been many roadblocks, but I know my road is the one God has asked me to drive. God gifted me with a wonderful man to drive this road with. God has entrusted us with two beautiful children. He also gave us four saint babies to watch over us. He's also given us an amazing support system including our extended families and you our Internet friends!

Even the struggles we've faced have been opportunities. They are opportunities to become better. They are opportunities to show God's graces. We can be like Mary (this IS still the Christmas season) and not only say "yes" to God when He gives us a challenge, but also pondering everything and giving back to God what is His: everything!!! God bless & Happy New Year!!!

Saturday, December 24, 2011

Merry Christmas Eve

God bless you! May Mary, the Mother of God, hold your hand through your trials... I always think of her at 9 months pregnant riding a donkey cross-country and then being forced to give birth in a stable without her womenfolk to support her. In those times I think typically a woman would be surrounded by her kinswomen, a learned woman (doula or midwife), and fellow villager women. However, Mary gave all that up because of the emperor's census. She travelled with Joseph on a donkey -- they were probably very fortunate to have one -- across country. It must have been a terrible and terrifying time, but she knew the Savior was going to be the result.

Two months ago I was in Houston preparing for major surgery.I was in a lot of pain and very anxious for the pain and surgery to be over. The surgery was relatively quick, but the pain (mostly from the surgery) is a continuing trial. The severe pain issues from before the surgery have dissipated for the most part. My collarbones don't feel like they're being pulled down my chest unless I over-use them. My arms are weak, but the nerves are stretching and hopefully healing properly. Physical therapy has carried me a l-o-n-g way towards recovery. I will never be as I was, but with this physical therapy I am doing so much better. In a little less than 6 weeks I've gone from being unable to lay flat (on my back, no attempts on my stomach) to being able to lay on my stomach while raising my upper body by my arms. That is a HUGE difference.

That's not to say that PT is all rainbows and unicorns... Some of the exercises and manipulations are terribly painful. I've got scar tissue/adhesions between the muscles and skin that constantly work against standing up straight. On area on my left is so painful that it feels a bit like when my appendix was inflamed. In order to eliminate the adhesion I have to press on it where it hurts the most and hold pressure on it for 90 seconds. That is the longest 90 seconds I've encountered for a long time! Thursday at PT Simon got to help by doing the pushing on my sore spot. He thought it was great and funny, I thought it was typical and torture!

May this procedure (surgery and PT) be my savior from my problems!

I also want to say Thank you to everyone who has contributed to my journey. I've been trying to send Christmas cards to those who send me notes, cards, or contributions, but I am a failure at correspondence. Believe me, I am so grateful for every little thing that everyone has done for me that I'd love to write notes to each and every one of you. The sad fact is that I don't because I get caught up in everything else going on: Christmas, kids, house, work, etc. It's no excuse really, but , that's what it is. I apologize if I've left you out... I plan on trying to write more cards before the New Year. God bless you all and Merry Christmas!!

Sunday, December 18, 2011

Weird things to wear me out...

I've become a master at identifying too late things that are quite difficult for me to perform. It's not that I'm stupid (I don't think anyway). It's just that I either don't fully consider the full implications of my activity or I'm just not in nearly as good shape as I thought. After all, it's been over 2 years since my chest and arms were as God made them. It's also only been 7 weeks since I had major surgery that even caused me to lose enough blood for an OR transfusion.

This weekend I chose to do some Christmas baking with the kids. I got them situated, all the ingredients out, as well as my various measuring devices and mixing bowls. I measured everything (like a good sous chef) so the kids could "help". The first step of my cocoa chocolate chip cookies was creaming the butter and sugar together. Well before the mixture was creamed, my arms gave out. Of course at that point I'd already begun, so there really wasn't much point or chance to stop. Oh, just as an FYI I *was* using my hand-held electric mixer, not hand mixing.

Another task I performed weeks ago even made my physical therapist look askance as me. I was doing my "homework" from her (stretches and such) with the kids. That lead to a game of "Mama Says". In the course of the game it is usually necessary for me to demonstrate a couple requests. It's also quite likely for the kids to ask me to join in the activities. So, about 4 weeks after surgery, I thoughtlessly did a somersault. The excruciating pain was immediate. Actually, I wasn't even halfway through the somersault before I knew it was a bad idea. My father-in-law kind of laughed at me. The kids thought it was awesome for me to join them. (shrug)

I do similar things all the time. It never fails that when I'm under restrictions something heavy needs to be lifted, I have time to re-organize a closet, kids misbehave, etc. I am a do-er not a supervisor, so I leap into the fray before giving a thought to my own capabilities or the full range of consequences possible with a given action. You'd think after 2 years I'd have figured it out, so perhaps I am a bit on the stupid side... However, I prefer to think of myself as overly optimistic and involved. ;-)

Monday, December 12, 2011

Get back to work!

Well, my 6 week recovery period is over... I'm so anxious about my first day back at work that I feel like I'm going to hurl... I was awake (still/again) at 430 this morning since I couldn't sleep. :-/ it doesn't help that my arms and abdomen are still sore enough that Nor does it help that my abdomen still swells when I wear real pants -- pants cause some pain too. I'm going to be continuing physical therapy twice a week too. I'm hoping and praying for the best, but kind of expecting the worst. However, the sunrise is beautiful with the glorious colors reflecting on the clouds. Even the frost is beautiful once I melted it off my Jeep. This is a day the Lord has made; I will do my best to rejoice in the small things and be glad to be alive!

Tuesday, November 29, 2011

One month ago...

It's been exactly a month since my last surgery & 21 months since my first surgery. What a long time to still feel a un-normal. :-/ However, i am healthy for the most part. I am also very hopeful that this last surgery combined with physical therapy will resolve the pain issues.

Due to the physical therapy, I am finally able to lay on my stomach! :-D it has been over 2 years since I could do that. Initially I couldn't lay on my stomach because I was pregnant. then I had my first surgery (mastectomy & expander reconstruction). Once I healed a bit from that, I began to have the expanders filled. Those things were WAY too hard to lay on! I had those for almost a full year. Then with the 'real' implants, they were too uncomfortable to lay on too. Now, the tension in the skin of my abdomen & incisions have kept me on my back &/or side. However, the PT has stretched me enough & softened the scar tissue of the incisions enough for me to sleep like God intended me to -- on my belly!

Too bad I still have to wear a bra 24/7. :-/ I have been wearing a bra 24/7 for 2 years as well. Again, initially it was caused by my pregnancy/baby. I had to bind my breasts to reduce milk production. Then the same surgeries require the constant support of a bra. However, these more natural & smaller foobs are infinitely easier to put in a bra.

On a troublesome note, I just found out my donated time is running short already. :-( However, I am very grateful for the donations I received! :-) With the wonderful people that donated, I have been able to keep our household of 4 afloat through this difficult time. God truly does provide if you ask sincerely & turn your cares over to him.

I have at least 2 more weeks of PT 3 times a week. Those 2 weeks (including this one) are also my last 2 weeks of complete time off from work. When I drop down to only 2 sessions a week (for an indeterminate time), I will have to juggle work & the rest of my rehabilitation. At this moment I am unsure how to best do that to give work 100% AND also give my rehabilitation 100%. Hopefully a good solution will be acceptable to all.

The physical therapist seems very pleased with my progress thus far. She is also very optimistic that she can help me resolve the numbness & tingling/burning in my arms & hands. She says the nerves have shortened & need very slow, careful, consistent stretching to reach 'normal' length again. I have at least 20 minutes of 'homework' that i must do twice a day every day to continue my rehab. Thankfully, my collar-bones haven't been nearly as sore as prior to this last surgery. However, she is also working with me to get my chest in better shape. Eventually, she thinks I will be almost as good as new.

She has been doing a combination of some massage techniques as well as stretching exercises. My left side is the worst in almost all aspects. Over the past 21 months, I have almost constantly favored my left side. I've been trying to protect myself from the constant pain & irritation of all that has been done to me. The skin covering my ribs, chest, & abdomen has stiffened & attached itself to the underlying tissues. In some cases the underlying tissue is very close to bone & therefore almost immovable. Either as an effect of that or due to not fully utilizing my left side, my rib cage doesn't "spring" as it should. In other words, when I try to take a deep breath my ribs don't expand -- especially on the left. This has also been complicated by the skin removed from my abdomen tightening all my skin. When I pull down on the skin covering my abdomen, all the skin above it (chest, neck, etc) moves. In a 'normal' person, the skin smoothly glides & doesn't affect such a large area of the body. This skin tension limits movement a great deal. as far as the nerves (& blood vessels) go, they are so shortened that when I raise my arms to shoulder height, the pulse in my wrists disappears for several seconds (definitely NOT supposed to happen). Standing in a doorway, pressing my elbows at about shoulder height into the doors lets me feel the blood rushing out of my hands. As the blood leaves my hands, they get cold & quickly begin burning/tingling & growing numb (again NOT supposed to happen). There are other things she has told me, but these are the biggies for me. I'll continue working with her until I'm better or she gives up on me.

My worst fear (besides the pain remaining) is that I'll push myself too hard too fast as I tend to do. Historically, I have always been in a hurry to get back to my 'normal'. After my knee surgery in high school, I pushed myself so that in 3 months not only was I running again; I was doing 300 meter hurdles at the regional competition. That resulted in 2 more surgeries on the same knee. After my mastectomy & second reconstruction, I rushed back to work, but ended up in excruciating pain & in difficulty with work. This time I'm trying to take it slow, but our finances require that I return to work ASAP. It's a conundrum, but I'm going to try to put it in God's hands.

Hopefully clear communication (guided by the Holy Spirit) will help everyone involved understand the full situation so no one gets fooled by my supposed 'normal' looks & actions. I've been told that I make it look too easy, so people tend to think I'm much better off than in truth. However, it goes against my nature to "wear sack-cloth & ashes" (scriptural reference) just to elicit sympathy. I will hurt myself before I neglect my obligations. However, the best option is to not hurt myself, but have an understanding with everyone involved with my situation. Hopefully, this is not impossible.

Thanks for everything!

Friday, November 25, 2011

2 years ago..

I was bald & 9 months pregnant. After our pre-meal, Andrew & I returned home. Around 1030 that night (the 25th), Andrew & I were rushing to Labor & Delivery because I was terrified that Rachel wasn't moving. They reassured me she was ok, but kept me anyway.

It was a sleepless night for me (Andrew fell asleep on the chair). By about 430 am, I felt the absolute worst contractions ever (MUCH worse than my 'induced' ones with Simon). Around 730 am Andrew's birthday present, Rachel Eleonore, made her arrival. Her big brother Simon came to see her along with my mom & dad, Andrew's mom, & Andrew's dad.

I repeatedly asked the doctors to check her very thoroughly to make sure my worst fears weren't fact. I was repeatedly assured that my bundle of joy was absolutely healthy & perfect. She had a little trouble maintaining body temperature & a touch of jaundice, but everything was well within normal limits. The chemotherapy that had saved my life hadn't affected her at all! As a matter of fact, she had as much or more hair as me!! We wore our matching hats (hand crocheted by me) for photos & even news stories.

Now it's been 2 years... So hard to believe. I'm cancer-free, but still not pain-free. Rachel is still amazing everyone: only now it's based on what she can do, not what she survived. Simon & Andrew are still pleased with their girls!

On their birthday, we are going to celebrate Andrew's 31 years & Rachel's 2 years. We're having a Cowboy & Cowgirl themed birthday lunch. It's been a wild ride, but we've stuck out past the timer. Yee-haw!

Tuesday, November 22, 2011

Rehabilitation begins...

Today I embark on another leg of this journey: physical therapy. I'm just now capable of mostly standing up-right. I still get very sore & stiff by the end of the day, but I'm obviously getting better.

I'm hoping to find some relief from the 'just-hit-my-funny-bone' sensations that plague both my arms. The Dr at MDA recommended a test to check for nerve damage (to see how extensive) as well as desensitization, exercises, and other rehabilitation as necessary. I just pray that it helps.

Saturday, November 19, 2011

Thanksgivings & prayers

I thank God for my family -- especially Andrew & Rachel on their birthday weekend -- & friends. I thank God for my continued recovery & wish for it to continue smoothly. I thank God for the continued support & love I get from my family -- especially Andrew & mom -- & friends -- especially the Sistas -- & even complete strangers throughout the world. I pray that Rachel & my Thanksgiving story will help other women facing a diagnosis like mine.

I pray that all people in the world will open their eyes & hearts to the wonderful gift of life & give thanks for life even when things look desperate. I pray that cancer patients the world over are getting good care & are thankful for the hard-working doctors, nurses & researchers who are trying to help end the tragedy of cancer.

Thursday, November 17, 2011

LifeSiteNews thinks I'm worthy of a story!!

I have been humbled again by the support and encouragement I have received from strangers. LifeSiteNews, a pro-life, pro-family news agency has written a story about my journey. The author interviewed my mom, Andrew & me in addition to reading my prolific blog entries. His summation of my story is very humbling as he believes that my story will help save lives! Thank you Mr. Pete Baklinski!

That is why I write here & tell everyone who will listen what has happened to me; not because I want praise, fame, or sympathy, but because I truly want others to know that scary diagnoses while pregnant DO NOT have to end as a choice between mother or child. Since God is the Author of Life and He only gives us what we can handle, I know that living my life through this journey and glorifying God while speaking out for life is what He called me to do. I know that even one life saved through my story means that my suffering was not in vain!

Here's a link to the story (I hope, I'm composing this on my phone):

http://www.lifesitenews.com/news/a-thanksgiving-gift-mother-with-aggressive-cancer-gives-birth-to-healthy-ba

Tuesday, November 15, 2011

Thank you KY employees

I need to give a shout out to my fellow KY employees. They have really carried me through this long struggle with kind emails, prayers, thoughts, & even time. Their compassion & generous nature have made my struggle a little less harrowing. Their support means more to me than I can say. So the next time you complain about state workers, know that in this great state, the workers care for one another & do their jobs with pride!

Monday, November 14, 2011

Faith

Through Faith I know that God cares for me. I know He's counted the hairs on my head. I know He's offered to shoulder my burdens. However, I can't help feeling that I'm so deep in this whole that I cannot be saved. I need to let go & let God, but that is incredibly difficult.

FYI: This is not with regards to my health, just the worldly consequences of my long struggle... In other words $ -- the root of all evils & the necessity for today's life.

Priceless...

Gas money for trip to Houston: $400, Hotel for 13 nights: $1064, Hospital fees for surgery: $45,000, Hope that my painful journey is over: PRICELESS!

As you see above, I've gotten my first bill from the hospital for my surgery. Although I know it took tremendous skill & lots of time to cut me to bits & then stitch me back together, that amount seems obscene. That amount doesn't count the surgeons, anesthesiologist, and other doctors that saw me. Wow!!!

Tuesday, November 8, 2011

Home Sweet KY!!!

Today I was released from TX!!! Yippee!!

I also met with a physical rehabilitation (Supportive Care) doctor. After performing a difficult (due to my abdominal restrictions) exam, the doctor spoke to me about my pain issues. He indicated that there may be some nerve damage &/or some muscular deficits from the mastectomy. Time will tell whether the surgery and physical therapy will be successful at eliminating this chronic pain. Hopefully by the end of my recovery period I will know the full extent if this latest adventure's success (or failure). My surgeon told me to think only of the positives. He commented that I was healing "remarkably well" as my stitches and the wires on my arteries were removed.

We have just returned to KY (at 5 am after driving all night). In 6-8 weeks I will have another follow-up appointment with the surgeon and physical rehabilitation doctor in TX. In this 6-8 weeks I plan to rest and rehabilitate. I will be seeking out physical therapy & some more diagnostic tests locally. I intend to rest first to recover from this traumatic surgery. Then I plan to throw myself into rehabilitation with my customary gusto.

I have received some kind emails from various individuals and groups, including some fellow KSP employees. I am grateful and humbled by any show of support. This support means more to me than I can say. Please keep it coming because this journey is still not over. Without support from people like you, I would not be able to do as well as I do. Thank you!

Sunday, November 6, 2011

Recovering

I'm slowly recovering. Today I ventured to Mass. We chose the MD Anderson chapel. I was unable to kneel due to the tightness of my entire front, but otherwise all was as it should be. I noticed that I was quite limited with my singing as well. Again I think that's due to the tightness of my front.

I'm trying to be kind of circumspect about the descriptions of my surgery and incisions. However, without trying to be graphic, I'm going to describe one of the incisions I have. My most limiting incision is on my abdomen. The line starts on my right hip. Not the front, though, as I expected, but instead on the back. I have a couple of blue stitches there. The line continues all the way down into my bikini line and around to the back of my left hip. At first description that doesn't sound too bad. I mean a straight incision isn't that big of a deal. However, this incision is actually only a small portion of my trouble. Prior to surgery the surgeon made a very large football-shaped mark on me. This was the harvest area. Basically, the surgeon cut this large football-shape out -- skin and underlying fat. The football-shaped skin that was removed is probably in a biohazard bucket somewhere. I didn't end up needing the skin the be transplanted with the fat. He then folded me in half and stitched the edges back together. The loss of skin is why he had to fold me in half -- I no longer have enough to easily reach across the hole he created. Thankfully, human skin -- especially abdominal skin on a woman -- is quite resilient & stretchy. However, in most instances, skin only needs to stretch a small amount at a time. However, since the crater he created was about 5" at it's widest, my skin is stretching quite far quite fast. To reduce the strain and pain of this stretching, I must walk, stand, sit, & even lay curved into a slight C-shape. Both the stretching & curving cause significant pain, however, as time goes on, my abdomen will eventually look, feel, & behave as it did before.

The drawing below is a representation of my abdomen. The pink dashed lines represent the drawing the surgeon did prior to surgery. The red line is the current incision I have on my abdomen. Incidentally, the belly-button in the drawing & in real life stayed in place, but was cut around and threaded through the stretched skin.

Monday, October 31, 2011

Memories...

I have little recollection of Friday and Saturday. Sunday, I remember quite well, even though I'd rather forget it. My surgery Friday was successful from the surgeons viewpoint. I haven't had any signs of infection or flap loss. The jury is still out as to the success of this surgery of relieving my chronic pain. As of Monday I just started to get some of the numbness & tingling feeling in my left arm. However, my collar bones aren't hurting. Sunday was really bad. Apparently, my body objects to anesthesia very violently on the second post-op day. I was retching so violently that my nose bled. Bleh. However, Monday I was awake from 5 am till 12 pm & did 4 laps around the nursing station. I ate & did all those things the doctors require post-op. I had 4 drains -- one lower left abdomen, one lower right abdomen, one left foob, & one right foob. The drains have been switched out for smaller ones too. Tuesday one of my drains was removed & the wires on my transplanted arteries were disconnected (the wires let the doctors hear the blood-flow). According to my doctors everything is looking good. I was released to the hotel mid-afternoon on Tuesday. When my other drains produce less than 20mL if swelling fluid for 2 days they can be taken out. It's looking like I'll go in Friday for drain removal. I have 2 appointments Monday & then we'll start the long trip home. My hopes are still high that at least some of my pain will be relieved from this surgery, but only time will tell. Thank you for all the prayers & thoughts!

Friday, October 28, 2011

Thursday, October 27, 2011

Nervous Nelly thy Name is Erika

Well, tomorrow morning at 515 I will be checking in for my 8-10 hour surgery. I'm marked up like a side of beef. Mom took a photo, but my blog isn't rated for that kind of content. ;-) If you've ever had doctors make a road map on your body with a Sharpie, you know how humiliating & frightening it is. If you haven't experienced it, pray you don't. The humiliation is because at that time you are no longer a person, you are a canvas. The doctors (there were 3 drawing on me) spoke among themselves as if I wasn't conscious. When they acknowledged me, it was to issue orders for me to move a certain way or to try to re-assure me. The reassurances didn't really work. I think the inside of my lip will bear the permanent mark of my teeth. It was all I could do to not cry. The doctors were not cruel or rude in anyway, but being stripped of all clothing except some brief undies & verbally dissected was just kind of hard to take.


Suffice it to save that large portions of my anatomy will be transferred from one location to another & the implants will be canned. Hopefully, the pain from the surgery won't be too bad. Hopefully, the constant pain will leave me.

For the first 48 hours, the transplanted tissue will be checked for appropriate circulation every hour. If circulation is compromised by clots, I will be rushed back to surgery. This failure only happens about 1% of the time. About 50% of those failures are salvageable. Sometimes the flap of transplanted tissue must be removed. After 48 hours the risk of flap failure decreases dramatically. At that point, hematomas, seromas, infections, and poor healing become the threats. With the exception of a severe infection, none of these other concerns are life threatening.

For about 2 weeks I will have to walk slumped over to protect the sutures on my abdomen. The skin from my belly-button to the low-rise waist of my pants & all the fat & some (maybe) of the muscle will be removed. Depending on the amount of muscle taken, the pain, recovery, & permanent functionality of my abdominal muscle will be affected. If much of the muscle is needed my abdominal strength will forever be compromised. It shouldn't be too bad, but it will definitely be another adjustment.

Just the thought is making me sick to my stomach. "Our Father, who art in Heaven..."

If all goes well, by 6 weeks I should have a good idea of whether my constant pain has been alleviated by this surgery. I feel compelled to point out, again, that this constant pain is THE reason for this operation. This surgery is complicated and scary. This surgery is not something I chose lightly because I wasn't satisfied with my appearance or because I chose too large implants out of vanity. The implants chosen for me are the most comparable to my natural breasts. That is the point of reconstruction -- to get back as close to normal/natural as possible. I have just had the misfortune to have excruciating pain with my reconstruction. No one understands my pain, it's origin, or even it's effect on my life. This is basically my last-ditch effort to alleviate the pain. If not for the pain & it's profound effect on my life, I would NOT be having this surgery. However, the truth is that I find myself without real options. Living with the pain has gotten me nothing but grief.

These last 2 weeks of no medication as a precaution against excessive bleeding &/or uncontrollable pain have been hell. Until I quit taking any medication for it, I didn't realize how much my nightly dose helped. However, having constant pain that is already a 6 on a 1-10 (10 = worst) upon waking in the morning is awful. Depending on the activities & stress of the day, by early evening my pain level was often at an 8 or a 9. Trying to work, drive, play with the kids, cook supper, or even take care of myself was monumental. It is my fondest wish & most fervent prayer that this surgery cures my pain or at least minimizes it.

Monday, October 24, 2011

Depression alert

Depression alert: the following is depressing, so if you're already depressed do not read. My cancer has ruined life as I knew it. I leave tomorrow for surgery #5. The pain is intense. The suck factor is major. Yet, I know I have blessings aplenty. It's just hard to see them through this cloud of tears. 

One thing I can tell you is that cancer really let's you sort the true friends from those who only pretend to care about you. Some 'friends' practically run screaming shortly after diagnosis. Some 'friends' are all sympathy & kindness while you're obviously ill & in treatment. The latter are the ones that cause the most pain. You come to rely on having these 'friends' in your corner, but heaven forbid your illness last longer than anticipated. Sadly I've found a few of these so-called 'friends' lately. It's even worse when these 'friends' kick you while you're down. These latter 'friends' are the ones who care when it's convenient for them or when it makes them look good. There are only two ways to keep these 'friends': have a text-book illness & recovery or die.

True friends are the opposite. They wait in the silence until you call on them. They give freely without thinking of the cost or what's in it for them. I've been blessed to have a good number of true friends. I am ashamed by my own lack of action towards some of these true friends. I hate to give excuses, but I have been so focused on my own recovery that I've let some of my true friends sit in the furthest corner of my mind. I think of these true friends when I get depleted of my will to fight. Just knowing there are true, wonderful people out there helps me cope. Thank you to my true friends. I'm sorry I've not been such a great friend back, but I promise that if/when I recover I will thank you to the best of mmy ability. For now you're in my prayers.

Thursday, October 20, 2011

Shaking & quaking...

Yesteday I had to drive to Frankfort for a work-related meeting. That's about 3 hours from my house. Of course, the weather chose to drizzle the entire way. Have I mentioned that driving hurts? Well, by the time I arrived at my destination, my hands were shaking with pain. My entire chest, arms, and neck were simply wrung out from the effort of controling the vehicle as I hurtled toward Frankfort. The meeting went well and before I was ready, it was time to make the return trip. Again, the weather was sigularly uncooperative -- drizzle interspersed with somewhat heavy rain. By the time I arrived home I had been gone for 12 hours and driven 400 miles. Andrew had to help me change clothes and cooked supper. He also had a nice fire in the fireplace for me! :-* I love that man!

I'm also still quite nervous about my upcoming surgery. My white blood counts aren't very good. I'm practically quaking with nerves about the possible out-come of this surgery. However, it still remains my best option. I think a combination of the drive yesterday and my pre-surgery nerves (combined with other anxiety inducing situations in my life right now) has produced a headache of tremendous portions. It feels as if my left eye is being clawed from my head and a stake has been driven through my forehead to exit out the back of my skull. Even with pain like this, my PET scan and MRI revealed no abnormalities. That is GREAT news, except it leaves me with debilitating headaches for no apparent reason. However, that is infinitely better than the alternative! ;-)

Monday, October 17, 2011

Anxiously waiting...

This weekend was great, but it was also awful. As I mentioned in my last post, I have begun the 2 week count-down and forced abstinence from almost all medications. Well, this weekend proved to be more than my poor arms, chest, and neck could stand. It's amazing to me that something so simple, like driving or hugging my children, can cause me so much pain. Not to mention that my amazingly healthy children weigh a ton (Simon is 45 lbs while Rachel is a dainty 30 lbs). Last night, I was hurting so badly that I finally broke down and took 1/2 of a muscle relaxer. The muscle relaxer isn't on the list of drugs to be avoided, but it is on a list of drugs that can lower immunity. My white blood cell levels from my oncology appointment on Oct 7 were low. Not low enough to bother Dr. M, but low enough to bother the surgeons at MD Anderson (I know this from my experience in July of 2010).

I've focused a lot on how I may look following this surgery, but looks are NOT the justification for this operation. Pain is the reason. I'm not talking about weekend-warrior-type pain. I'm talking about mind-numbing, excrutiating, debilitating pain. It's a bit difficult to describe, but I'll do my best. The first problem I reach is where to start??? Since I mentioned reaching, I'll start with my arms.

Bend your arms like you're going to do the chicken dance. Feel the area your thumb is pressing on? This area causes me a tremendous amount of pain that defies description. My 2.5cm (about an inch) diameter tumor was in that location on my left side. This area is where the pectoral muscle connects to the upper arm. These muscles, tendons, and ligaments are under a very thin layer of skin for me. There's no fatty tissue present to add a little cushion because my initial surgeon disected out the tumor with very little "margin" (under only spotty local anesthetic). However, the surgeon doing my mastectomy needed to ensure that all the cancerous cells were removed, so she took the "margins" on the left and a similar amount on the right. In other words, she took an extra inch or more of tissue surrounding my entire tumor area. This has left me with a visible "cave" -- the one on the left is deeper and more obvious, but the right is noticable to me as well. Due to my reconstruction surgeon's recommendations, I wear a brassiere 24 hours a day, 7 days a week. As most women know, the cups extend into your under-arm area, including that area where your muscles, tendons, and ligaments must flex. The combination of no cushion on these tissues and pressure from my brassiere on these same tissues causes a peculiar sensation to creep down my arm. On one hand, I want to say its kind of numb and tingly. However, on the other hand, something that's numb should never generate so much sensation. This feeling extends from my under-arm to my elbow all the way down to my ring and pinkie fingers (although sometimes my whole hand is affected). The best way for me to describe it is as hitting your "funny bone". Sometimes this pain is only present when I stretch my arm a certain way. Other times, like now, the sensation is fairly constant. The only variable is how much it hurts and how much of my hand is affected.

From my arms to my collar-bones is a short journey. This pain is probably the easiest to describe, yet the hardest to understand. I constantly feel as if my collar-bones are being pulled upon. Sometimes I can almost envision a set of fingers wrapped around each collar-bone trying to pull them from my chest. The implants I'm carrying around as breasts weigh about 2 lbs each. Two pounds may sound insignificant, but day in and day out the constant weight of 2 lbs can add up to pain -- especially when you consider that the only support these 2 lbs get is from my bra (causation of my arm pain) and/or the skin covering the implants. Unlike natural breasts (or foobs created by using a person's own tissue), implants are not attached to my chest wall or any other support structure. They are suspended primarily by skin and a very thin, stretched-out muscle layer. This constant weight causes pain that goes from tolerable to impossible any time I must lift or carry anything over a couple of pounds. Above I mentioned that neither of my children are under 30 lbs, so even picking up my children has become something that causes me tremendous pain and sadness.

Next in this progression comes my chest. For as long as I can remember, I've always had chest pains. Not of a heart-attack variety, but of an asthmatic variety. Anxiety also causes my chest to get tight and eventually hurt. The pain in my chest is sometimes of this sort, that tight feeling that eventually wears down the muscle fibers until you feel like they're going to fray. That's the best type of chest pain I have. Other times, the tightness has gotten so bad combined with a particular motion (or even laughing) that sends a sharp stabbing pain through my chest. This pain I think is a combination of the implants irritating my chest wall, tension, anxiety, and asthma. Removal of the implants will hopefully remove at least one of these causes.

Pain in the neck comes next, and I don't mean the kids, husband, or work. I literally mean my neck hurts. This pain generally manifests itself after all the other pains have brought my defenses down. The tension from my chest creeps up my neck as the pain continues or worsens. I slump my shoulders, round my back, and tuck my chin to try to protect my painful areas. As my shoulders slump, my bra straps dig into the tender area between my shoulders and base of my neck. The neck pain again defies description. Sometimes it is an extension of my collar-bone pulling pain. Sometimes it is an extension of the "funny bone" pain from my arms. Sometimes it is an extension of the tightness of my chest. Always it is debilitating and exhausting. On a bad day, the pain engulfs not only my neck, but also my lower jaw. Turning my head, eating, or even swallowing become monumental efforts of excrutiating pain.

Again, the line of pain extends to include my head. My head will be much studied tomorrow. I have been having blinding headaches for the past several months. Headaches are nothing new to me, I think I began having them around age 6. Everything including allergies, sinus, migraines, tension, and stress have been given as causes for my past headaches. Sometimes an allergy/sinus pill removes the pain. Sometimes a migraine medicine relieves me. Sometimes 12+ hours of sleep is necessary before I feel human again. Lately, nothing has been working -- not even the narcotic pain relievers. The pain again varies but the worst is when it feels as if a railroad spike has pierced my head right above my eye (sometimes left, sometimes right, sometimes both simultaneously) and exited at the base of my skull. This development was noted by Dr. L in Houston with a small bit of concern. She recommended an MRI, "just to be sure" that I haven't experienced a metestasis to my brain. She reassured me that she seriously doubted anything would show up on the MRI. Dr M kind of snorted and said that he'd add a PET scan to the MRI, but that he was just scheduling these tests to set my mind at rest. He cavalierly said something about me being too young and healthy for something like a brain metestasis to occur. Of course, this kind of cavalier attitude has previously been disproved by my initial diagnosis. Tomorrow is the big day for my MRI and PET scan... 730 am my aching head will be visualized repeatedly.

My reasons for describing these various pains I suffer is not to generate sympathy. The purpose is actually two-fold. One, I want to document how I feel right now so I can somewhat objectively compare my current pain to my post-surgical pain. That will be the benchmark that measures a successful operation October 28. Two, I tend to gloss over the pain because I internalize so much of it. Instead of speaking (or writing) about the pain, I pick the fluffy aspects like what I'll look like, mostly to avoid any pity. Another aspect of avoiding the pain issue is that if I verbalize it (whether in writing or speech) I can no longer try to ignore it. Verbalization makes it real and unavoidable. Sometimes verbalization makes the pain the elephant in the room. So far, none of the doctors I've visited have ever experienced a patient quite like me. None of them have ever seen some one with pain issues like me. None of them have ever seen someone who deals with it (the pain, the diagnosis, life, ??) quite like me. What can I say I'm an individual individual! ;-) However, for all my quirks and medical oddities, there is no denying that my pain is real and has reached insurmmountable levels. This is what my current battle is about -- relieving the pain I'm living with constantly, that no one understands.

Friday, October 14, 2011

2 weeks...

I've got 2 weeks left until my next step on this journey. I'm hoping & praying that this will be my last medical step on this journey. The rest of the journey (hopefully) will be one of spirit and mind. :-) Today is the day that a L O N G list of medications becomes taboo, including, but not limited to: ibuprofen, topical pain relievers (IcyHot), narcotic pain relievers, and herbal remedies. I've tried some of everything it seems, but now I have to give them all up until after my surgery.

I've been keeping myself from completely freaking out by psyching myself out about the anticipated results of this surgery. The biggest result sounds pretty vain, but in reality it may be the root of this current problem: smaller foobs. This bonus (which doesn't sound like much of a bonus if you're not a member of the big boobie club) is actually starting to make me look forward to the surgery. Since I wear about a 34DD, my clothing is sometimes stretched beyond its tolerance and/or I must buy things bigger than my frame. Neither of which is flattering. As a matter of fact, the other night I tried on a dress and commented to myself that it'll fit much better once the 'girls' are smaller.

I'm not sure what my abdomen will look like -- its hard to imagine not having the excess skin from my 2 full-term pregnancies. I've accumulated a little bit of squish in a prime location for muffin-top. However, the difficulty I have imagining the front-center squish gone is complicated by the fact that it kind of just wraps around and includes my hips. ;-) To be perfectly honest, I'm pleased with my body shape. Even considering how painful my foobs are, aesthetically they are balanced for my frame. I'm afraid that the smaller (but more real) foobs I will have after surgery will make my body unbalanced. Afterall, 38" hips need a 38" bust to be proportionate in my mind. However, I will be happy if my new foobs produce proportionate pain as my hips.

All this talk about foobs and boobs has gotten me (and my mom) to thinking... Is boob and/or boobies a vulgar term? We're torn about it. I personally use the term foob or boob instead of breast for a couple of reasons. Number one of these is that it's not so stuffy as saying "breast" all the time. I know some people aren't comfortable with either term (breast or boob -- not to mention foob), but breasts (or boobs if you prefer) are a part of our God-given anatomy. I'm as comfortable using the term boob as I am using the term butt. They're kind of on-par with one another. They are both "unmentionable" areas. There are lots of names for both -- some more vulgar than others. As younger children, most people probably giggled excessively when either the formal terms or the slang terms were used. We have gradually become accustomed to using the terms, but still on occasion we giggle at what seems like inappropriate use of the terms (at least I do).

Some of the Breast Cancer Awareness groups have used Boobies to "sell" awareness to the masses. There's the "Feel your boobies" campaign, the "I love boobies" campaign, there's even a photo of a little girl with a slogan on her shirt referring to curing breast cancer before she grows "boobs" I think. If I'm hyper-critical I can see where these campaigns can seem vulgar. However, since my children's pediatrician used the term "boobie-baby" for Simon when he was breast-feeding, I'm much more comfortable with the term than I was previously. Having children, breast-feeding, and my breast cancer have brought me to a whole new level of body-parts. At this point in my life, perhaps I'm a little free with information on a personal level, but I think it's working for me. I probably wouldn't speak to the Pope about my foobs or boobs, but I don't think I'd be comfortable talking to him about breasts period! What do you think?

Wednesday, October 5, 2011

23 days to go & I'm already a ball of nerves


This is my creation for a blog I
contribute to called Catholic Sistas
 for Respect Life/Breast Cancer awareness month
 If I wasn't afraid I'd lose my curls, I'd be pulling my hair out over my upcoming surgery. << That is my weak attempt at humor for this post.

For some reason this surgery is causing me more stress than ANY of my others (that I remember). I think at least a portion of the stress is caused by vanity. I have nightmares of waking up with gaping holes in my chest while the doctors just shake their heads and say, "It looks fine." Really though, I know that is the least of my concerns. I know this surgery is fundamentally more risky than my previous surgeries. Even the bilateral mastectomy was less of a risk simply because its pretty simple to amputate. The difficulty comes in trying to transplant to an area already fraught with inflammation and scar tissue. Part of the difficulty is rooted in the vanity side of the operation -- afterall the entire purpose of this type of surgery is to *look* normal. However, infection of both the donor site (my belly fat) or transplant site (the new foobs) is a significant possibility. Its also possible for the transplant to just not 'take'. I'm also paranoid that going this drastic is not going to affect my pain levels significantly. Well, I *KNOW* the surgery is going to immediately cause an increase in pain level. The chancy part is whether my chest, neck, shoulder, & arm pain will decrease, stay the same, or even possibly increase. The true purpose of this (final?!?!) surgery is to relieve my pain, but so far, no one is willing to give me odds on a positive outcome.

Another aspect of this surgery that I've hinted (ok, ok -- I outright asked/am asking for donations) is the financial considerations. In my previous post, I outlined that I am the *only* income for our household of 4. My husband & I figured it out last night: by the time you subtract the mortgage & my gas money to commute to work, we have approximately $250 per person for the entire month. That has to cover groceries, car insurance, diapers for two large kids (Simon's pretty good during the day, but nights are a whole 'nother story), toiletries, medical needs, incidentals, and the unexpected costs associated with life and having 2 worn out vehicles ('88 Ford Turbo Coupe & '95 Jeep Grand Cherokee). Even with coupons & savings cards, our grocery bills typically reach $200 twice a month. Then you have to factor in getting *to* the grocery store when driving aforementioned worn out vehicles. I didn't realize it as much when Simon was younger, but diaper boxes really do contain a whole lot less the larger the child. To be completely honest, things have gotten so bad that Andrew & I are taking steps toward bankruptcy. I wake up every morning for work and feel nothing but dread; not necessarily because I hate my job, but more because I know I'm stuck working to *barely* support my family. When I sleep my dreams are populated with the horrors of surgery (including my death) as well as financial ruin (my family being homeless). That makes for a bad attitude, panic attacks, and exhaustion (even though I know perfectly well that my extended family would never let us be homeless or go without necessities).

Going through this surgery requires me to put a LOT of faith in my doctors and our Merciful God. I'm not very good at turning the reins over to another. Hence the panic attacks, hot flashes, and overall flipping out I've been doing lately. I've always felt like I need to protect others from unpleasantness. I hold my emotions in so someone else can have me as their support and/or so someone else doesn't have to support me. I work really hard to try to reassure everyone that everything will be ok. My cheerful facade is just that -- a facade. It's no more real than the old-timey movie sets in our favorite movies.

Sometimes I can trick myself into believing my facade is my truth. Then something happens to reveal a crack. The crack slowly becomes larger & larger until I feel like I can no longer withstand the whirlwind of emotions coming toward me. I've been told to "let go and let God." Oh, how I wish it was that easy! I pray to God to lift the burden from me. I've been told, "Just like the footprints in the sand, God will carry you if you'll just let him. He already, is in fact." I turn around to look, but instead of footprints at all, all I see is the whirlwind obliterating all the progress I've made. I look at the image of Christ on the cross and I Faithfully know that my burdens and sins were nullified by His Act of Sacrifice. However, I can't help but also see the cross I'm carrying and nailed upon. Christ's was the Ultimate Sacrifice for me and you. However, when the winds overwhelms me (us?), it is so difficult to see how His Selfless Act could *really* take away my sufferings. Maybe I'm looking at it wrong. Afterall, Christ did tell us that we had to pick up our cross and follow Him. Maybe I have picked up my cross, but I'm not yet to the path in the road where Jesus takes my "yoke upon His shoulders". Maybe its because I'm willfully (even if subconsciously) turning from His path by pridefully creating my own.

Even as I type this, I know that without Christ's help I'd have already succumb to my life's troubles. So, even as I question myself and God, I Faithfully *KNOW* that He is watching over me. I'm in that odd state of acknowledging God's help but still requiring so much more. Neither the grief counseling books nor the cancer help books have accurately described this place I feel I'm in. I don't doubt God nor do I blame God. I don't ask Him "Why", but I also don't ask Him often enough for help. I'm not angry or belligerent. I know that somewhere inside this mess of my life is a message from Him to me and to everyone who has been touched by my life. I just can't see that message to me. I can see the message to others and that's another reason why I have such a cheerful facade. I want everyone to know that it *IS* possible to keep the Faith while going through trials. I want everyone to know that it *IS* possible to carry your child to term and receive treatment for cancer. I want everyone to see the positives of my situation -- not the negatives. However, behind the facade the negatives build.

This, my journal, is a release of these tumultuous emotions I have. Althought I'm speaking "to" an audience (you my readers), in reality I am speaking to myself. I am reassuring myself that if I can put my troubles in black & white (well, my draft is black & white) then there *must* be a way to resolve them. Plus, an outpouring of the Holy Spirit from your prayers is ALWAYS a welcome addition to problem solving!

Saturday, October 1, 2011

26 days and counting... Help needed





Today is the beginning of Respect Life & Breast Cancer Awareness month. October is *my* month, in my opinion, because I've blended the two so well. I respected life (both mine & my unborn baby's) as I fought breast cancer.
The problem is that as much as I wish my journey was complete and I was back to 'normal', that is not the case. In 26 days, I will be going under the knife again. This will make the fifth surgery I've had since my diagnosis. This will be the 2nd attempt to make my reconstruction pain-free. Most breast cancer journeys shown on TV show a woman who is diagnosed, seeks treatment, recovers, & goes on with life with little problem. That is a tremendous understatement of real-life scenarios. I know I'm not the only one who has continued to suffer from their diagnosis long after the rest of the world assumes healing is complete. Few people can understand the overwhelming disruption to life in general. Things that used to be stepping stones become milestones. Life does not simply begin again where it was prior to the diagnosis. I've not stepped into anyone else's shoes, but I know that my journey has been fraught with issues that have ultimately affected every aspect of my life.

With the continued problems (constant pain, numbness, and tingling in my chest, shoulders, neck, and arms) that I've had beyond the extended leave for big issues (chemo while pregnant, more chemo after delivering a healthy baby girl, bilateral mastectomy with immediate expander reconstruction, ovary removal with serious complications, emergency hysterectomy, and 2nd stage reconstruction with implants), I have used all the time I have accumulated myself by going to various doctors as attempts to solve my continued issues. I've been to 2 plastic surgeons, a pain management doctor, my regular doctor, my oncologist, and had various tests run as well as having the assorted illnesses that come with stresses on the body -- migraines, stress headaches, stomach bugs, flu-like symptoms, etc. This will be the fourth time I will be off work for an extended period of time. The people of the great state of Kentucky -- my co-workers and other state employees -- have previously dontated their own sick time to ensure that my family can continue to be supported. At this point, I hesitate to ask (beg) for more donated time since I have received so much. However, I must ensure my family's continued welfare. I am the bread-winner of the family -- all income and insurance comes from my pay-check. Andrew (my husband) has been incapacitated with a debilitating back condition. The doctors can't do much beyond giving him pain medication. He even had to close his shop. As anyone with children knows, they're expensive! ;-) So we have more outgoing funds than incoming.
This next surgery is going to be significantly more involved than my last surgery for reconstruction. We're driving down to Houston on October 25th since my pre-op appointments begin in the morning of the 26th. My surgery is on the 28th. The doctor's estimate is a full week in the hospital following surgery. Then we're planning on about 4-7 days further in Houston for a follow-up appointment before returning home. The drive home will likely take at least 2 days since I will be incredibly tender from the long surgery. Then there will be the recovery time -- 6-8 weeks total (including the week in the hospital). During that time I will be unable to work or do much of anything. I am terribly concerned and anxious about how we will be able to afford all the time off I need to heal properly verses the amount of money all this will take.

I hate asking for a hand-out from anyone in these hard economic times. I hesitate to ask the workers of the state of KY to donate any more of their time -- especially since we all "donated" furlough days to the state last year. I hesitate to ask anyone's help. However, if there's one lesson I've learned during my illness, it is to ask for help when you need it. I need it now. I'm adding a PayPal button* to this blog in the hopes of getting some financial help for this (hopefully) last leg of my journey to wellness. There is also still a local account (Owensboro, KY) at PNC Bank that is named Erika Vandiver's Medical Fund. Asking this of you, my online supporters, gives me a sick feeling in the pit of my stomach. I know so many of you have your own struggles that you deal with daily. I also know that you have lifted me up with thoughts and prayers through this long journey. Your prayers and thoughts have been greatly appreciated and I hope to continue to receive them. However, there is little to be gained by not asking for help when it is needed. Help is needed.

*The PayPal account I'm using is Andrew's. I'm not very active with eBay or PayPal, so my account is quite limited and does not have a debit card for easy access on the road. His email address is MrFixIt@connectgradd.net -- that will probably be the header for the PayPal donation page. For bank statement purposes, the description for the transaction will appear as ERIKAS FUND. Again, thank you for your donation, prayers, and/or thoughts!

Monday, September 12, 2011

Excited & trepedatious

I had 2 appointments in Houston today. The first was with the breast oncologist, Dr. L. The second was with my new plastic surgeon, Dr. C.

Dr. L was pleased to see me. She was also extremely pleased to hear how well Rachel is doing. She suggested for me to try yoga, pilates, accupuncture, and possibly a different medication in order to control my pain. She was very excited that Rachel was developing so well. She also let me know that they are working on projects to hopefully keep women with genetic histories like Rachel's from having to walk this journey I have walked. She was just in the news with an article about my type of cancer.

Dr. C was quite nice too. He, of course, was unsure what exactly is causing my pain. He said that the weight of my implants could be causing my pain issues, but he's never had anyone come in with the same type of pain issues I have. He gave me 3 of the same options as my local doctors. However, he added another option: another surgery but using my own tissue this time. There are a few down-sides to this option. One: it is a long and involved surgery. Two: the amount of tissue I have in my abdomen is minimal, so the resulting breast mound will be fairly small. Three: the surgery will involve some fairly intensive pain and leave at least one more scar. Four: the surgery cannot be done until December. However, this option is my best bet. So I'm scheduled. I don't know what I'm going to do until then, but that is my plan for now.

Tuesday, September 6, 2011

Another count-down...

... until we leave for Houston. A week from now I will hopefully be in Houston getting ready to arrive at MD Anderson.

Right now the plan is to drive my father-in-law's Ford Fusion to TX. Neither of our vehicles are long-distance drivers (1995 Jeep Grand Cherokee Limited & a 1988 Ford Thunderbird Turbo Coupe), so we have to borrow a vehicle. We'll be leaving Sunday morning pretty early & driving straight through all 900 miles. My first appointment is a check-up with my breast oncologist, Dr. L. She's the wonderful doctor at MD Anderson that specializes in young women with breast cancer (that's me), BRCA1 cancers (that's me), and cancer treatment while pregnant (that was me) -- so I was a trifecta for her! After that I will be meeting a new plastic surgeon to hopefully address the pain issues I'm having with my reconstruction. Since I've never met him, Dr. C, I'm not really sure what to expect. However, since I'll be at MD Anderson, I'm sure he'll be great! He's also supposed to be setting me up for a referral to a oncological pain doctor. At least one of MDA's pain doctors has published an article about Post-Mastectomy Pain Syndrome (PMPS). I'm expecting that will be the diagnosis I am handed.

From what I've read, PMPS does not have a "cure" merely band-aids that are supposed to make life more livable. At this point, doctors aren't entirely sure what causes PMPS nor how to treat it. There are some theories about how to prevent it, but even those are not guaranteed. They've identified women who are more likely to suffer: young (that's me), experience neuropathy (that's me), high BMI (not me yet ;-), extensive axillary dissection (sort of me since my tumor was in the axillary tail of my left breast), and some others that I've forgotten. So again, I'm kind of a trifecta for this syndrome. :-( Some of the treatments for PMPS are NSAIDS (BTDT with OTC as well as Rx), neuropathy drugs like Lyrica & Neurontin (BTDT with serious side-effects), therapeutic massage (I'm trying, but my insurance won't cover it), and biofeedback. The worst part is that I've already tried most of the remedies, but not yet found relief. That will severely limit what this doctor can do for me. However, I'm hoping that the unmet Dr. C & the unknown pain doctor will be able to give me a plan.

Wednesday, August 24, 2011

Houston bound again...

I just got the return call from Houston scheduling my appointment for Sept 12 with a Dr. Chang. I've sent messages to Dr. L & Dr. K for check-ups as well. That way we'll get more doctors for our time.

Now the issue is figuring out the most cost effective way to travel. Flights on Expedia range from about $375 per person round-trip plus car rental and hotel. Driving takes 19 hours or so & at least $300 of gas plus hotel, not to mention that we don't have a reliable vehicle to drive 900 miles.

If anyone has any bright ideas, PLEASE let me know! :-)

Trade Tears for Fears or Are They One & the Same?

It seems like all I ever do is whine lately. I apologize for that. The sad fact is that I actually do feel worse now than I did 2 years ago pregnant & doing chemo. Back then I at least had the comfort of knowing this phase was transitory & at the end (well, middle of chemo) I would have a beautiful baby girl to cuddle. I was also not stretched so thin between work, home, & health -- nor were my chest muscles stretched so thin. I'm still waiting to hear from MD Anderson about getting a consultation with a plastic surgeon there. The pain and strain continues to build.

Yesterday was a horrible day for me. I spent almost a solid 4 hours crying. I wasn't just crying to myself -- no I had to go & cry in front of the receptionists at the doctor's office, random people at the doctor's office, my direct supervisor, my co-workers, my husband, AND my mom all at different times. For the record: I DO NOT CRY. If I'm crying then the world as I know it has come crashing down upon me. To the outside observer it seems like a simple mistake or a casual dismissal. However, to me it is the straw that broke the camel's back.

My tears yesterday were of pain, frustration, disappointment, fear, stress, and exhaustion. One of the biggest factors is fear though. Almost all the other reasons I cry are based on fear. I'm afraid that I'm just going in circles (frustration). I'm afraid that I'm not taking the right steps (disappointment). I'm afraid that I am not fulfilling all my obligations (stress). I'm afraid that I'm going to miss something (exhaustion). I'm afraid that I'm just going to have to continue living this way. I'm just afraid period. I give myself all the same platitudes & inspirational sayings that frequent Hallmark cards & motivational posters. However, at this point I can't convince myself to believe. I've become jaded and cynical.

Today I resolved to do better. My nails (fingers & toes) are a day-glo bright pink. I'm wearing peep-toe heels (so show off my day-glo bright pink nails). I'm wearing a bright pink shirt. I've plastered a smile in my mind. So far it seems to be working, but I can feel the fear still lurking in the background. I'm trying to be confident that the day-glo bright pink is enough armour to stave off the guerrilla warfare of fear. Mostly, I'm trying to be confident that His invisible shield surrounds me and comforts me. Good luck & God bless!

Wednesday, August 17, 2011

Congregations vs. Cancer

Text in black is a direct cut & paste from the official bulletin insert for this program.
Text in green is my commentary, addition, and personal thoughts/opinions.
On Sunday, Aug. 28, churches in the Tri-State (IN, KY, IL) will participate in Congregations vs. Cancer Sunday  (the brain-child of a behind-the-scenes member of News25). On that day, we will pray for a cure for cancer and collect a special offering to go 100% towards research through the American Cancer Society. If you are not local to my Tri-State (IN, KY, IL), then your ACS branch will most likely not have a clue about this program. Therefore, you could also set aside a donation to give to a local cancer victim, local cancer program, or medical facility of your choice. I'm not 100% confident of the ACS's purity on life issues and funding to propose they should be the only benefactors of these donations. Please join us for this special day in which our church will move forward in faith and hope toward a cure.  Give in memory of someone you know who has lost a battle with cancer, give in honor of someone who is now fighting cancer or give so no one will hear the words “You have cancer” ever again.
“So we fix our eyes not on what is seen, but on what is unseen…” – 2 Corinthians 4:18
The American Cancer Society is involved in finding cures and has been since 1946. In that time, it has devoted around $4 billion toward research.  It has made many breakthroughs in the fight against cancer through detection (mammograms, PSA tests), identification (finding links to smoking and lung cancer, and discovering some cancer-causing genes) and treatment. A significant portion of typical donations to the ACS go to fund various other aspects of the organization and NOT toward research. Most cancer awareness organizations (Susan G. Komen in particular) use the moneies raised to pay office help, advertising fees, etc. I advise that you thoroughly research whichever organization you intend to gift with your hard-earned money BEFORE handing over a check.
Above all, prayers are absolutely necessary for those stricken with this horrible disease. It is only with God's help and judicious acceptance of assistance from family, friends, neighbors, & even strangers that ANY cancer victim makes it through day-by-day. Be sure to keep these unknown victims in your heart, soul, & mind as you pray. There are a LOT of us out in the world rubbing shoulders with 'normal' people daily. We appear 'normal' for the most part, but inside we have been irrevocably changed and may even suffer physically from this horrible disease. Please don't abandon your prayers for us when we appear 'normal', for often-times nothing could be further from the truth. Every night I (& many other cancer victims) pray in thanksgiving for the caring souls who support us physically, emotionally, and spiritually. Thank you & God bless!

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Friday, August 12, 2011

To foob or not to foob... That is the question

Well, it looks like surgery is in my future again. There are a few hurdles to cross first: my insurance no longer covers Dr W, so approval could be difficult; I have to decide if the risks are out-weighed by the benefits; and I need to decide to go smaller or to forgo the foobs altogether.

Dr W is writing a letter to Humana to convince them the surgery is necessary. My insurance dropped ALL U of L doctors because they objected to getting less than 1/2 the $$ their counter-parts at UK & Vanderbilt got. I don't think Humana can refuse the surgery as long as he uses the appropriate medical code due to the laws protecting cancer patients.

Dr W is not sure that the surgery will help the pain. It could, but he's never had a patient with this kind of issue. Smaller implants will weigh less, therefore maybe pull my muscles less. If we also drop the projection, the weight will be closer to my chest. That can help since it's easier to carry any weight closer to the body. Buying bras could also be much easier -- 32DD or 32E bras are really hard to find. Another surgery carries risks of infection, capsular contracture, loss of circulation, etc. Smaller implants may also not look right since my natural breast were this size, my nipples are positioned for this size breast, there will be excess skin, as I gain weight the foobs will not balance with the rest of my body.

Theoretically not having foobs at all would be the most assured solution. :-/ I'm just afraid that the lack will be bad for my psyche. I'm also afraid I'll look really weird. The way my body is designed, I think my chest is pretty concave. That concavity would create an obvious void under clothes. While I know my womanhood is not centered on my breasts, they are a normal part of feeling like a woman. The absence of any tissue on my chest would be a constant reminder of what I lost & my body's betrayal. The foobs are a constant reminder too, but at least it's only visible by me -- not the whole world. However, in some ways I am tempted to go this route because this pain is almost unbearable & it seems that no one knows what to do to fix it. There's even a chance that the absence of implants will eliminate the pain either. I'm also unsure whether it would be reversible. In other words, I'm unsure that once I eliminate the implants, but decide I cannot live that way, I can get new implants. I don't know what they would do with the excess skin (including my nipples). I have a lot of thinking, praying, & research to do.

Wednesday, July 13, 2011

More pain

I'm not sure what I did, but I'm having SERIOUS chest spasms. It all started by me trying to adjust the back of my bra with my left arm/hand.  I initially used 1/2 a Valium & 1/2 a Lortab. The pain was so bad that I couldn't wait until I got home (it was 330), so I had to call my dad to ride home with him to medicate. That means I had to leave my borrowed (from MIL) car in the parking lot over night. I also have to get up extra early to ride with dad. I'm so thankful to have that as an option!

Even with the meds I was hurting so much on the way home & when I arrived home that I could barely hug the kids or Andrew. I tried to take a hot bath to relax the muscles. However, the pain got worse by simply lifting a book slightly above my head.. I've taken another Lortab & still can't move much. :-( I'm in so much pain that I couldn't even dry myself after my bath. Thankfully Andrew is a wonderful husband! <3 He even coated my chest with Theragesic (like Ben-Gay or Icy Hot, but stronger).

When, oh, when will this end?? I was feeling optimistic after talking to the chiropractor today. I've apparently made progress that pleased the doctor. According to him my nervous system (according to the scans from today) is in good shape. Of course we also spoke about how my body apparently is one of the 2 out of 10 that doesn't follow the text-books.

More pain

I'm not sure what I did, but I'm having SERIOUS chest spasms. It all started by me trying to adjust the back of my bra with my left arm/hand.  I initially used 1/2 a Valium & 1/2 a Lortab. The pain was so bad that I couldn't wait until I got home (it was 330), so I had to call my dad to ride home with him to medicate. That means I had to leave my borrowed (from MIL) car in the parking lot over night. I also have to get up extra early to ride with dad. I'm so thankful to have that as an option!

Even with the meds I was hurting so much on the way home & when I arrived home that I could barely hug the kids or Andrew. I tried to take a hot bath to relax the muscles. However, the pain got worse by simply lifting a book slightly above my head.. I've taken another Lortab & still can't move much. :-( I'm in so much pain that I couldn't even dry myself after my bath. Thankfully Andrew is a wonderful husband! <3 He even coated my chest with Theragesic (like Ben-Gay or Icy Hot, but stronger).

When, oh, when will this end?? I was feeling optimistic after talking to the chiropractor today. I've apparently made progress that pleased the doctor. According to him my nervous system (according to the scans from today) is in good shape. Of course we also spoke about how my body apparently is one of the 2 out of 10 that doesn't follow the text-books.

Monday, July 11, 2011

Confusion


Andrew & I drove to Louisville to see Dr. W (my new-old plastic surgeon) Friday. Dr. W was very professional and courteous. He examined me and approved of the implant placement and appearance. However, he differed significantly from Dr. S (plastic surgeon from Evansville) about several things. First, he disagreed about the degree of bottoming-out I have. He didn't seem to think bottoming-out was much of an issue. He also disagreed about further surgery. His advice was to give myself closer to a year to heal and see if that mitigates the pain issues I'm having. He did not think smaller implants would help the pain issues or be aesthetically pleasing. He was actually quite concerned about another surgery so soon after my other issues of the past year (or two). He was also of a different opinion from Dr. S about the degree of retraction of my pectoral muscles. He had me push my hand down on my hip. Doing so moved the implant -- proving to him that the implant is indeed under the muscle. I pointed out that Dr. S said that the muscle had attached to the skin -- causing the implant to move when the muscle contracted. He looked dubious about that. Both explanations make logical/anatomical sense to me. However, he could not explain my lack of collar-bone hollows after my mastectomy & reconstruction. Like Dr. S he also doesn't really have any idea why I am having pain issues. However, unlike Dr. S he gave me some muscle relaxers since to it seems the pain originates with muscle spasms and/or contractions. The doctors bra preferences are also markedly different -- Dr S recommends very tight underwires, but Dr. W recommends well-fitting and supportive sports bras. He recommended even trying some sporting-goods stores (like Dick's) for some high $$, high performance, high support bras.

All-in-all I think it was a good visit. It wasn't what I was hoping, but at least he seems more concerned with getting me to feel better as opposed to simply focusing on my appearance. I actually broke down and teared up when I was trying to explain that something needs to be done to help me. I pointed out that I'm only 30 and already going to a pain management doctor. I go back in a month. He told me to continue seeing the pain management doctor for the time being. He also suggested to continue (re-start) my massage therapy. As I told him, at this point I am grasping at any straw presented to me.

Thursday, July 7, 2011

July is *the* month!!!

July started with my birthday as usual on the 1st. Then my mom's birthday (the 2nd). Then a 4th of July party on the 3rd, followed by another one on the 4th. Then on the 5th I had my first pain injections. Now today, the 7th, is my cancerversary. Two years ago today I was diagnosed. Two years ago today my life changed for the worse in some ways, but for the better in other ways. On the 8th I'm going back to the plastic surgeon in Louisville for a 2nd opinion on my implant problems. On the 10th it'll be 2 years since I found out Rachel was indeed a Rachel & not a Joshua! On the 14th it'll be 5 years since Andrew proposed to me. On the 15th I get paid! :-D That's just the first 1/2 of the month! Whew - no wonder I'm so tired!

Thursday, June 23, 2011

Alternatives

Even people that know me quite well aren't often aware of what goes on behind my cheerful facade. I think to an extent most people are like that. Apparently I'm quite good at it -- that is until I break down completely. I've reached that point. I think **hopefully** I'm balancing out again, so as to not be so depressed and downhearted. However, as soon as I build back up to presenting my cheerful facade, people quickly seem to forget that life is not all unicorns & rainbows for me. I know I'm guilty of doing the same for other people, but my past 2 years have given me a unique perspective on the subject. I've been told lately that I "make it look to easy" so people forget that under the smiles & giddiness ;-) I struggle with a variety of somewhat unusual ailments/difficulties. I'm just pondering the alternatives I have in my life right now.

I'm having some stress at work as a result of the struggles I'm having with my health. That's really hard on me because I'm responsible for bringing home the insurance premiums and such. Since I've been out so much over the past 2 years, I have very little time left. Nor am I any longer the sympathy inspiring bald pregnant girl. My time to take off (vacation, sick, &/or comp) continues to dwindle as I face more doctors appointments to get me healthy again. This leads to...

Stress affects my health more than it probably should. So the stress at work adds to the downward spiral of my health & vice versa. So the more stressed I become about having no time left (for doctors appointments or, heaven forbid, a vacation) the more I need the time off to recover my health. The more time I take for my health, the less time I have at work and therefore the more important every hour is. The more work time I spend, the more I stress and feel unhealthy. Its just a vicious cycle.

I went to my plastic surgeon again Tuesday with my increased pain. The answers I got were/are not promising. Dr. S's 'solution' is to do another surgery with capsulorophy (shrinking the pocket the implant sits in) and using smaller implants. The theory is that this might help the pain in my upper chest, neck, and shoulders. However, the issues that cause that pain (retracted pectoral muscles, lack of muscular support of the implants, super stretchy skin, and difficulty fitting bras) will most likely not be fixed. The only thing the new surgery will fix is the additional weight since she's recommending I down-size from 700ccs to 350-400ccs. I'm not concerned about the smaller size. The concern I have is that without fixing the musculature issues I'm having, the pain will continue. Even Dr. S admits that there's a good chance the smaller implants will do the same thing these larger ones have (stretch the skin and bottom out). Another surgery that may or may not actually fix my issue may also cause other issues. The more times the skin covering my foobs is disturbed the more likely it is that I'll suffer from loss of circulation -- leading to skin death and/or capsular contracture -- leading to another surgery to correct it.

One of her other fixes for my situation is to send me to a pain management doctor for trigger point injections in the juncture of my breast-bone and ribs. Since I turn 30 next week, I'm not a big fan of already having the necessity of a pain management doctor being among the first things recommended. That implies, to me, that for the rest of my life I'm going to have this pain to deal with. I know people live with pain for much of their lives on a daily basis. However, most people I know don't deal with a pain level of 7-8 on a 1-10 scale on a constant daily basis that is exacerbated by normal activities like stretching, getting something off an upper shelf, or (heaven forbid) picking up a child at this age. I also have the fore-knowledge that typically I don't react to pain medications as expected. Strong pain medicine may block a portion of my pain, but the major effect it has is to make me drowsy. If medication is only going to make me drowsy I cannot function well enough to work... Thereby circling back to paragraphs two and three above.

To defend Dr. S, I did call MD Anderson to see about speaking to another plastic surgeon since mine moved away from MD Anderson. His opinion -- relayed to me through a very nice patient advocate -- was that a) without seeing me they can't say anything, b) plastic surgery is unlikely to reduce my pain, and c) a pain management specialist may be my best option. The very nice patient advocate did give me the names & numbers of two recent Fellows from MD Anderson that have since moved closer to KY. She also advised me to contact my original plastic surgeon -- the other Dr. S -- that did my initial reconstruction. He has moved to John Hopkins, but has maintained his speciality of reconstruction.

Today I went to the chiropractor. I'm not a big fan of chiropractics, but it seems preferable to really big needles going into my chest with mind-numbing medications coursing through my body. Plus, any port in a storm seems viable when the pain gets bad enough. I have been adjusted by this chiropractor before -- 3 years ago before Simon was born -- so I knew he was a pretty straight-forward guy. I really wasn't that hopeful, but I decided to just lay it all out without sugar coating anything. To be honest, some of my issues do strike me as being nerve related & that could tie into chiropractics. So they x-rayed my back & discovered a slight left-right curve to my spine between my shoulder blades. More discussion followed and then I got adjusted. I'm actually slightly more comfortable now (I think) than I was before I went. They want to see me again tomorrow and Monday to make sure things stay the way they're supposed to I guess. I'm still having some numbness & tingling down my arms, but I'm unsure whether that is back related or bra/implant/muscle related.

I'm also checking with a theraputic massage practicioner. I've had a really difficult time finding any documentation of the pectoral retraction problem Dr. S indicates I have that is probably causing my pain. That disheartens me. I'm hoping that the theraputic massage masters have heard of the issue and have come up with some way to alleviate some of the pain without resorting to crazy medications. Overall, the stresses of daily life, work, & health have put me down for the count. I'm trying to get up, but feel like I get kicked while I'm down or trying to get up. Hopefully something will give soon. I appreciate prayers, thoughts, words, etc. So please keep them coming. I know without God's support present through you I could not have made it this far. I'm struggling to live up to the expectations I've given myself and that I feel I owe everyone else.

My Chemo-Jane hair-style

My Chemo-Jane hair-style
I just had to have my mom buzz my hair because it was falling out so badly.

Pre-op wearing my hand-crocheted cap with my prayer shawl.

Pre-op wearing my hand-crocheted cap with my prayer shawl.
My loving husband is watching me distract myself with a game on his iPhone.

2 days after my BMX w/ 100ccs in the TEs

2 days after my BMX w/ 100ccs in the TEs
I even have a fashionable belt to hold up my drains.

3 weeks post-op w/ 400ccs in each TE

3 weeks post-op w/ 400ccs in each TE
The smile is fake because the TEs were irritating!